No words but agree with Breezy it does give you more time to get your head round the situation. It may well be worth ringing your local Carers group - if you have one to get local support? Is there anyone who would go with you for the next meeting? I think it takes time to arrange an Advocate but worth at least asking your local Carers group if there are any contacts you could pursue.
Please have a think about counselling now you have a little breathing space.
I agree with BB - ring and make a formal complaint. I can only imagine the stress you must be going through waiting and waiting. That said, maybe there is some discussion/disagreement with regard to your husband being ready for discharge?
Also use their disorganisation to insist one named person is appointed to liase between you and the hospital. Your husband should have a named nurse already, but there should also be a senior nurse on the ward responsible for all discharges. Make sure you know who this is. Also an email address so you don’t have to keep ringing up, and also this gives a clear written record. Have you met the consultant in charge of dad?
Exactly what BB and Helena have said.
Do have someone with you if you can, it will be a support and a help for noting things or reminding you of things you have on your list.
Some hospitals have a discharge liaison officer, unless they’ve done away with them.
Exactly what BB and Helena have said.
Do have someone with you if you can, it will be a support and a help for noting things or reminding you of things you have on your list.
Some hospitals have a discharge liaison officer, unless they’ve done away with them.
Help again if you can please. Hubby is nearing the end. He has become a shell of a man, has had enough and is seriously requesting to be allowed to die.
The Consultant a really nice guy, rang me yesterday and said that at hubby’s age, 80, with his comorbidities, realistically there is no way back and they were taking it hour by hour and I should be prepared.
However, when I approached the sister and ward staff this afternoon they they got quite abrupt with me and said he was still being treated and that wouldn’t change.
It’s absolutely not what hubby wants. What do I do? What can I say?
Alfreda, it’s a really difficult time. I’ve lost too many loved ones.
I would suggest that you searched for “Signs of Dying”. You will find well written articles from those involved in hospice care.
It is a long slow downhill slide for all of us, one which generally cannot be halted.
I’m sure the consultant would not have told you what he did without carefully considering the situation, however the nurses will still care for him as they are required to do, ensuring he is clean, comfortable, and hopefully free from pain.
You need to decide now which funeral director to use.
The end may come at any time and it will be better if you have already instructed someone, and told the hospital.
Much better to do this now while your head is fairly clear, than through tears and shock.
Also think of his favourite music for the service, and who might like to know he is nearing the end.
Alfreda this is so hard for you both.
Your husband has had the most awful prognosis.
He may be asking to die so as not to prolong the agony, fearing losing his dignity or whatever else might be occurring to him about it.
The nurses are doing their job, palliative care, managing his pain and keeping him comfortable.
In their eyes you are getting extra time together before the inevitable - they will have seen plenty relatives arrive just afterwards or wishing they had come to visit more etc.
Work with them, ask about his care, extra visiting to help him and being with him.
Ask them how do I handle it when he’s asking for us to let him die.
One time my mother had a nasty procedure and was upset, I spoke with the nurse at the end of visiting and asked her to chat and reassure my mother, she took me to the family room and we chatted abut it, she gave me a hug and tissues and went and reassured my mother and then said I can go back in with her for however long my mum needed me. I’m often allowed in at mealtimes to spoonfeed mother when she’s unable to feed herself, or on admissions getting her settled in. But this was all pre covid.
However there are some wards that wouldn’t entertain such.
Give it a try, speak with the nurse asking about the care and end of life stages and comforting him through it.
You could also try the chaplain for a chat.
My Dad took the decision that he no longer wanted to be treated, or fed. The hospital respected that decision and so did we. One of the more difficult decisions I’ve had to make.
I think you need to speak to the consultant again and make it clear what happened with the nurses: it’s important to find out what the hospital is really doing. And to compare it to this:Being cared for in hospital - NHS
I know this is really difficult. It doesn’t get easier, I’m afraid. You’ll almost certainly feel guilty at some stage: it’s a natural feeling, even if there’s no reason for it. You’ve done everything you can to support your husband.
I cannot add anything as totally agree with the comments given by Breezy, BB and Charles. I personally do not agree with prolonging life at any cost, and feel your husbands wishes should be respected by the medical profession given his age and co morbidities. Sending hugs as next few days/weeks are going to be challenging for you. Try to get the nurses ‘on side’ if you can.
Thank you for this. Yes, I have requested to speak with the Consultant again, especially since the ward admin said hubby doesn’t qualify for end of life care, as he is still being treated. Thankfully, hubby and I have said all we needed to say to each other, so I’m going to stress hubby’s decision and his need for more compassionate pain management.
My mum had a horrible mix of conditions, needing more and more pain relief.
Fortunately, I had Power of Attorney.
The GP rang me up to say she was concerned for mum, and I told her that pain relief MUST be her top priority, regardless of the consequences.
Mum had already told me that when she woke up, she just regretted it, so I knew she’d had enough. he GP ga extra pain relief, and mum passed away gently in her sleep. I have told my eldest son in no uncertain terms that when my time comes he must do the same for me.
Quality of life is so important, especially at the end of life when there is no hope of a reasonable existence left.
We have progress… The nurse told me that Hubby was awake enough to have a serious talk with the consultant and he would be coming to speak to us both. We formally asked for end of life care and it has been agreed.
Incidentally, I truly appreciate EVERY response I have received on this forum. I have no family or friends for support, so you have become a precious resource to me.
My next question of you good people… hospital or hospice?
Personally I can’t speak highly enough on hospice care. Where I live we are very fortunate to have several facilities who provide excellent end of life care. You will need to make some enquiries in your area. Historically, many of my relatives have used hospice care and there was never any issues.
My father had wonderful treatment from our local hospice. /after he was diagnosed with terminal prostate cancer, initially he went to their Day Hospital, picked up from home, and delivered back at the end of the day. ANY health problems were quickly spotted and treatment or medication arranged. I cannot speak too highly of their care. He had a lovely room for the last two weeks of his life, with french doors overlooking a beautiful garden. Staff were so kind.
Definitely hospice, Alfreda. They specialise in palliative care and will also support you. Friends with experience of hospices supporting them and their loved ones can’t rate them highly enough.
I’m so glad you found this forum and posted, you are not alone at this difficult time.
Hospice most definitely if there is a bed available.
They take great care of the patient and spouse/family.
Hospice is far more peaceful and dignified in a private room.
it is far more sedate at the hospice.
They generally have the time to speak with you and explain things to you and take care of you as well, ensuring you take care of yourself.
They took great care of my dad and my mother lived in the chair next to his bed, they had a relatives bedroom for her. One night it was snowing and they didn’t want my twin and I driving back so they gave us soup and sandwich and a bed for the night and toast in the morning.
There was a breakout lounge with tea and coffee, a garden and a chapel there.
From the experience with regard to friends and family, would agree with hospice. Usually the visiting hours are much more flexible, and staff trained in ‘end of life care’ and they understand the ‘quality of life’ and have chosen to work in this field. Also they may well provide counselling for YOU whilst you are going through this. I realise they vary from area to area but our local hospice as a wonderful reputation…